Blogs

World MS Day

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It dawned on me as I began writing this blog for World MS Day that I have had MS for most of my adult life. I know that might sound strange as I obviously knew I was diagnosed at the age of 22, soon after I left university, but it was the realisation that actually I haven’t experienced much adulting without managing a chronic condition too. You’d think I would’ve got the hang of it by now, wouldn’t you?!

For anyone unfamiliar with multiple sclerosis (MS) it is a neurological condition where the body’s immune system starts attacking the outer covering of the nerves (myelin) which causes the messages from the brain to different parts of the body to be disrupted (picture a phone charging cable with damaged casing so the wires are exposed in places.) This can affect pretty much any part of the body. It can cause things like numbness and pins and needles, muscle stiffness and pain, tremors and visual disturbance and overwhelming jet-lag like fatigue. MS can also affect memory and cognition as well as bladder and bowel function, balance and mobility. It can impact every part of how you think, feel and move. Also everyone is different and no two people with MS are the same. Their combination of symptoms and MS journey are unique to them.

There are different types of MS too. The most common type is relapsing-remitting (RRMS) with periods of new symptoms or previous ones flaring up followed by times of remission with less disease activity.

I have the secondary progressive type. This is often what RRMS becomes after 10-15 years. The flare-ups reduce, but the level of disability increases. Oh but you can still get relapses with secondary progressive, so my consultant informed me, which seems decidedly unfair!

It was during one of the flare ups recently that I experienced something affectionately known as the ‘MS Hug’ for the first time. Don’t let the name fool you, it is not nearly as soft and comforting as it sounds. Instead it is when the muscles in between the ribs go into spasm so that it feels like a tight band is around your chest. Like a too tight girdle or corset. It usually lasts for a few seconds or minutes at a time, but in my case it went on for days! Weeks in fact. It would slacken off for a time and then come in waves that would nearly take my breath away. That combined with the chest high numbness, pain and decreased sensation and strength in my hands it was not a fun time. For only the second time since I was diagnosed over 20 years ago, I couldn’t hold a pen properly to write. That is a very strange and frustrating situation. You take it for granted to be able to jot down a note, write a shopping list or sign your name and I was struggling to do any of that. I would put the pen in my hand, but I couldn’t make it move in the right way to form words on the page. It also made holding cutlery tricky and peeling vegetables nearly impossible! Thankfully all of these symptoms have now mostly improved, although not disappeared completely. You see that’s the other thing with MS, following a flare up or relapse you often don’t completely get back to how you were before. There is new normal to adjust to.

The theme for this years World MS Day is invisible symptoms. Most of the symptoms I’ve described you can’t see. You can see the stick I use to help me walk or the scooter I’m whizzing round the shops on, but you can’t see the rest which can be equally, if not more debilitating than what makes me need the mobility aids.

So if you see someone get out of a car parked in a disabled bay who ‘looks fine’ please don’t assume they are, if the person in front of you at the supermarket checkout is taking forever to get the money out to pay for their shopping please be patient and if someone doesn’t smile or wave back in the street please don’t assume they’re being rude. They maybe concentrating as hard as they can to function in a body that is not cooperating. Just because something isn’t visible to others, doesn’t mean it’s not there.

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My first HuffPost blog

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Here’s a link to my first HuffPost blog!

https://www.huffingtonpost.co.uk/entry/unpredictable-me-life-with-multiple-sclerosis_uk_5ac7dbf6e4b01e0b61b762a6?utm_hp_ref=uk-lifestyle

Social media…a force for good?

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Social media is an integral part of life for many of us these days and despite recent revelations about how our data may have been used (and the fact it can be incredibly addictive) it can be a really positive thing too. It can bring like-minded people together for a cause, interest or hobby, offer support for people experiencing the same condition or situation as well as enable friends and family separated by distance to keep up with each other’s lives. It can also be a fantastic platform for advertising small businesses, social or fundraising events and it can help people who are isolated to feel like they belong to something, but on the flip side, the temptation to compare our lives to other people’s posts online can leave us feeling decidedly inadequate!

This is because we only generally share the best version of ourselves online. The flattering photo of us looking as close to fabulous as possible or the picture of our child with the award they’ve won, smiling sweetly at the camera. However, we are less quick to share a photo of us looking decidedly rough or of our child slamming doors and throwing a tantrum, because we don’t want people to see that side of our lives. We want the airbrushed version. Filter well and truly in place.

And what about when people we consider friends share pictures of a night out we weren’t invited too!? Or when someone posts photos of their exotic holiday when we are struggling just to pay the bills? Or when it seems everyone is sharing news of their pregnancy and what we want more than anything is to have a child, or people announcing news of their engagement when we long to be married? It’s in your face, it’s in your hand, it’s on your phone and yet it can be strangely compelling to view these selected snapshots of other people’s lives. Constantly!

For the bereaved or the separated it can be particularly painful. On the one hand there is great potential support available online via groups on social media, but to access this you will no doubt have to negotiate the updates from other people’s lives. Other people’s lives that carry on regardless, unaffected by the loss you feel so deeply and that hurts so much. As time passes it may becomes less painful and less all consuming, but sometimes to see a picture of a smiling happy family with a mum, dad and children doing something fun together is too much to bear. It’s not jealousy, it’s just capturing something that you don’t have any more.

So how can we make the social media experience a more positive one? Well, we can change the settings on our phone so it isn’t pinging every time someone shares a tweet, uploads a photo or posts an update. That way you’re not tempted to check what it is (that funny meme or cute cat video can wait to be viewed later!) There is also the ‘unfollow’ option. So if a certain person’s posts upset you or wind you up…stop following them! (The option on Facebook also means you don’t have to ‘unfriend’ them, but it will stop the person whose posts irritate you clogging up your newsfeed!)

Maybe consider finding an online group for an interest you have, or a cause you’re interested in. Use social media to connect with other like minded people in a positive way. Or maybe consider starting something yourself! Is there a need for a support group for something? (Beautiful Stationery Addiction?!) or do you want to find people who share your love of something? (Beautiful Stationery?! Do you see a theme emerging?) Social media can be a fantastic way of reaching a huge number of people who have similar interests or experiences to you.

The charity I started for bereaved children certainly wouldn’t have reached as many people, as quickly as it has, without the use of social media. When I first had the idea I was able to raise the money I needed to get started in just over 24 hours, by sharing a crowdfunding page on Facebook. I also set up a page for the group and could share it, reaching far more people than I would’ve done by putting up posters and sending out letters. It has also been a great way of finding other organisations doing similar things in different parts of the country as well as linking up with other local groups and charities.

So, for all of the bad press and negativity, why not decide to take control of social media and choose to use it for good? You might be surprised what you find.

The beautiful game

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I have a confession. I love football. I love watching it on the telly and I don’t mind who’s playing (a perfect Sunday afternoon for me is watching back to back football matches on TV), I love watching my son’s team play (even though their first win of the season is still elusive), but most of all I love going to watch a match in person.

I must have been about 12 or 13 when my dad took me and my younger brother to our first football match at Spurs and from then on my love of football grew. We became members and went to most home games. I loved the ritual of getting dressed in the colours of my team and the excitement of walking down Tottenham High Road with all the other fans who had the same hopes for the match ahead. We would buy a programme and maybe a copy of the fanzine, then take up our position on the terraces. Dad would bring a bright orange plastic milk crate for my brother to stand on so he could see the action over the heads of those in front of him (different times…you can’t even take a bottle of water with the lid on into a match now!) We would stand in the same spot every match. There may not have been seats, but we all knew where to stand and we would get to know those around us and see the same characters every time. The 2 older ladies who would come together and be as vocal as any of their younger, male counterparts (one in particular would shout loudly to encourage Gary Linekar whenever he had the ball!! “Come on Gareeeeee!”) and the man who would walk around the terraces selling small, white paper bags of roasted peanuts. “Peanuts, get your roasted peanuts!” he would shout (Not sure that would get past health and safety these days.) And the singing. I love the singing. There is nothing better than thousands of people singing the same song to encourage their team (or put off their opponents!)

I may enjoy the matches at the time, but I can rarely remember the scores and goals like my brother and dad can. They can remember a match from 20 years ago, what the score was, who scored and sometimes describe the goal in detail too! However, one match I do remember well is the 1991 FA Cup semi final against Arsenal which was the first to be played at Wembley (we won 3-1 and Gazza scored a now infamous free kick!!)

My love of going to see live football could sometimes be a little controversial as for a time in my teens I only seemed to pick boyfriends who were Arsenal fans! So I would get the chance to go and watch Arsenal home games sometimes too and because I loved the football I didn’t actually care who I was watching (unless of course it was the North London derby when my loyalties were firmly in the Spurs camp.)

I moved away from London in the early 90’s so don’t get to many Tottenham games these days and more recently I get my live football fix from watching York City as me and my son have become season ticket holders this year. Now that is a very different experience to watching a premiership match. It is a crowd of around 2000 and there is a 50/50 prize draw at half time! And as they are currently playing in the National League North against teams like Blythe Spartans and Curzon Ashton, many of the teams are part-timers who earn their main wage as plumbers, postmen and teachers. This version of the beautiful game is often not pretty and can be frustrating to watch, but I still get the same feeling of anticipation on match day.

As I put on my 17 layers of clothing to keep warm and wrap the red and blue scarf around my neck I am filled with the eternal optimism that we will be victorious even if the opposition, form and league position suggest otherwise. At the beginning of the 90 minutes the slate is wiped clean and anything is possible.

I enjoy the camaraderie too. The discussions about the team selection, new signings and where on earth this particular team come from? (Where actually is Curzon?!) The faces around me are different from my days on the Tottenham terraces, but the characters are still there. The lovely chap who always has a bag of mints to share, the voice of the man who sits a few rows back shouting loudly…generally at the referee pointing out where he’s going wrong and the steward with the fabulous purple hair! The bags of peanuts being sold on the terraces of my youth have been replaced by shared bags of sweets passed up and down between those we sit with.

So as another match day looms and the fight to remain in the play-off places continues, I have the familiar sense of anticipation for the match this afternoon (home to Chorley if you’re interested). I will put the layers on, find the season tickets and pack the sweets in my bag, filled with the optimism of a win…that will last at least until kick off.

First Dates

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I love the TV programme First Dates. For the uninitiated it is a Channel 4 show where singletons are matched up for a blind date at a restaurant in Covent Garden, looked after by the rather suave French Maître d’ Fred and his impossibility attractive waiting staff. We, the viewing public, then watch the date unfold, with all the awkward introductions and initial polite conversation that becomes more relaxed as the wine starts to flow. We cringe when it all goes wrong and we delight when it’s a perfect match. And this is not just for the young and beautiful. There are all ages, shapes and sizes from all sorts of backgrounds.
So as I watch these strangers embarking on their dating adventures it got me thinking…am I ready to start dating?

It’s a topic that comes up occasionally when I’m talking to my widow friends. I’ve been widowed for over 4 years and I’m really very used to being on my own now. There are things I miss about being part of a couple, like having someone to share things with, to go places with and to stop me feeling like the odd one out at social gatherings when it seems like everyone else is part of a pair. I do miss having someone to share the driving duties with and who will cut the lawn for free and I think the young man in my life would quite like a man around to do boy stuff with.

But would I feel like I was betraying my husband if I looked for love again? I’m not sure.  I don’t wear my rings often these days, but to actively seek someone new just feels a bit weird.

Not least because I haven’t dated for well over 20 years and without wishing to sound incredibly old, a lot has changed since then! We just about had brick-like mobile phones with pull up aerials and dial up internet on a big beige box of a computer kept in the corner of the room. There was no swiping left and right and ‘Plenty of Fish’ was where you found cod and chips wrapped in newspaper, not a potential partner. I met my late husband at Uni where there was a ready made social scene and I was young! And healthy and active. But I’m now a disabled single mum in my 40’s, with a little more glitter (ok, grey!) in my hair than I would like. I’m just not sure who would want to sign up for that? My son said ‘maybe there’s a nice man out there who would like your personality and not mind about the MS’ (but this is the same boy who thinks I would make a good teacher because I have a ‘good shouty voice’ so I’m not sure how reliable his opinions are!)

And you see, I’m a suspicious sort and I really don’t think I could ever do the internet dating thing as I would never believe what any potential date said! I’ve heard too many stories of men not being who they say they are, not actually being single, being downright creepy or thinking the best introduction is to send a photo of their boy bits! (Why?! Just why?!) I know it’s not all like that and I have heard of success stories too, but I’m not sure I can be bothered. It’s tricky enough balancing what I have to do now with the energy I have available, I’m not sure I have any spare for dating.

I don’t doubt there are some great single men out there…somewhere…and if I happen to stumble across one (possibly literally!) then maybe I’ll think about it, but if not, that’s fine too.

So am I ready to date? Probably not. I’m certainly not going to be actively searching anyway. Not unless they start holding singles nights in Paperchase…;)

Why I write

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So, you might be wondering why I started writing these blogs that occasionally appear on your Facebook newsfeed or maybe you’ve never given it a second thought, but I’m going to tell you anyway! (So if you don’t want to know the reasons…look away now!)

To help others

The main reason I write my blog is to (hopefully!) help others in similar situations to those I find myself in. It’s certainly not a pity party. I try not to moan and I do aim to inject some humour if I can. Personally I find it reassuring to read about someone who has had a similar experience to me, so I hope others find it helpful too. I have written about the reality of living with MS, bereavement, single parenthood and setting up a charity along with others on anxiety, anger and changes to the benefit system. My hope is that others will find reassurance in reading my experiences, even if it’s to make them feel that they’re making a much better job of it than me!

Raise awareness and challenge preconceptions 

I love to write to raise awareness about different topics that the general public may be unaware of. Fortunately most people don’t know what it’s like to live with a chronic condition, especially when many of the symptoms are invisible. So I try to explain what that’s like so that people have more of an insight, because there are actually many people living with all sorts of ‘hidden’ illnesses and it would be great if there was more of a wider understanding. 

I like to try and challenge preconceptions too. Following my experience of bereavement, both personally and through the charity I run, I realise that the general understanding of grief and more specifically how children grieve is often misunderstood. I hope that some of the blogs raise awareness about the needs of these children and families and how we are seeking ways to meet them. 

It’s also a good way of talking about issues that are often more difficult to discuss face to face, like mental health issues. It’s a whole lot easier to write it down and share than it is to drop it into a conversation, but it means that people who are experiencing similar difficulties know they’re not alone and might even feel able to ask for help or at least talk about how they are feeling with someone else. 

It is also a good platform to raise awareness about political issues like changes to the benefits system, the NHS and education. I get to vent my spleen about injustices! 

It’s therapeutic 

I’ll be honest, I do find writing therapeutic. I have developed a love of writing that I’ve never had before. I write privately for my eyes only too, I don’t share everything publicly, but there are occasions that I think it’s worth sharing a version of my thoughts more widely. 

However, these blogs are not me spilling all of my innermost thoughts onto the screen, they are the edited, relevant highlights. It is therapeutic as in positive and helpful, but not therapy as in treatment. I firmly believe that the internet is not the place the bare your soul, but I think a little self disclosure can be helpful. 

Because I have been encouraged to!

It’s all your fault! I wrote my first blog to mark World MS Day and was overwhelmed by the positive feedback I received from people…not just my friends (who have to be nice…it’s in the job description), but even some people I didn’t know!! So I thought I’d give it another go and that was well received too! So, it grew from there. I don’t publish blogs regularly, but more as topics arise and whilst the feedback remains positive I’ll keep doing it 🙂

Confidence  

I never felt I was very good at writing at school. I got a respectable B in my GCSE (and we won’t mention the A level result) but I was never confident in my ability. I got an ok degree, but again the writing didn’t come easily. It was always a challenge to reach the word count required for essays, but now I often have to cut down what I write because it’s too long! I think I found it difficult because it felt like it was all opinions about stuff that didn’t really matter. Whereas this stuff does matter. It matters that people going through tough times don’t feel alone. It matters that people have a better understanding of disability and grief and lone parenting. And if sharing a little of my experience provides an insight into those areas or helps to reassure someone in a similar situation then I think it’s worth it. 

What’s next?

So what’s next? More of the same I think. I will continue to write about topics, causes and ideas as and when they arise. Regular readers will know I have been asked to write guest blogs for the national charity MS-UK, so that’s an exciting opportunity too. They say everyone has a book in them, I’m not sure about that, but a few hundred words in a blog? That I can do.